Monday, February 21, 2011

Why I became an ME/CFS advocate

Many years ago, it occurred to me to wonder how celebrities choose their causes. If I were famous, I'd want to use my fame to make positive changes in the world—of course I would—but how to prioritize?

AIDS was the big issue in those days. AIDS would be a great option. But was AIDS more important than child abuse? Was child abuse more important than people starving to death in third-world countries? What about political prisoners? How about Alzheimer's disease?

In the end, I came to the conclusion that the cause probably chooses you. Your sister or your best friend is diagnosed with breast cancer, and you make it your mission to raise funding for a cure so your sister or your best friend survives, and nobody else has to go through what she's going through.

The personal connection is a big part of how I got into advocacy for ME/CFS. Someone important to me had this disease. I wanted him not to. Pretty simple.

Pretty simple, but not the whole story.

* * *

The other day, a friend of mine e-mailed me a link to an article about ME/CFS research. An excerpt:

Patients struggling with chronic fatigue syndrome may be helped the most when standard treatment is coupled with cognitive behavior therapy or exercise therapy, new British research suggests.

The findings also support the somewhat controversial notion that incremental adjustments in physical behavior and/or mental attitude can ultimately have a positive impact on the disorder, the authors said.

The friend who sent the link knew I was interested in ME/CFS and wanted to know what I thought. I wrote a fairly pointed response, explaining everything that was wrong with the study.

"What's the problem?" I hear you cry. "They found treatments that help ME/CFS patients. Isn't that a good thing?"

It would be, if they actually helped.

The truth is, there have been many such studies on cognitive behavioral therapy (CBT) and graded exercise therapy (GET). They are fatally flawed in the following ways:

1. The cohort problem

Myalgic encephalomyelitis is a neuroimmune disease characterized by chronic pain, crushing exhaustion, and post-exertional malaise (symptoms worsen with exertion, sometimes permanently). However, the definition for the disease called "chronic fatigue syndrome" has been broadened to include people who do not necessarily suffer from pain or post-exertional malaise—people who have some completely different disease that causes fatigue, or clinical depression.

So a study on this "chronic fatigue syndrome" patient population is going to have problems right out of the gate. It's like testing a hypothesis that chemotherapy can help diabetics, and including a bunch of subjects who have cancer instead of diabetes.

2. Sampling bias

Say you've got ME/CFS. You often have to decide whether to spend your tiny allotment of energy on a shower or making yourself something to eat. One day you hear about a study. If you become a subject, they'll require you to exercise. If you exercise, you won't have enough energy for the shower OR the food.

Do you participate?

Neither would I.

So it isn't simply that they've included subjects who don't have ME/CFS. They've actually set it up so that the real sufferers are less likely to be involved.

Bogus studies like the one above? They are why I've become an ME/CFS advocate. For other medical causes, raising awareness means spreading accurate information. For denigrated diseases like ME/CFS, raising awareness means constantly fighting the entities doing their best to lower awareness. You have to explain over and over again how positive thinking doesn't help, exercise hurts, and the disease isn't just in people's heads.

17 comments:

Meg
said...

Another great blog. It is heartening when someone who does not have the disease steps up to advocate for patients with ME/CFS. And you do it so well. Thank you, thank you, thank you. A very grateful patient.

Thank you so much for writing such a concise and meaningful blog. We need people like you more than just about anything else. So grateful to have you standing up for us and against this ridiculous study.

I thought that I would have made a pretty good advocate for CFS, since I was fairly well-placed in a position to know a thing or two about it.

But have been angrily informed in virtually every CFS group that I have been in, "YOU cannot speak for CFS. You are arrogant for thinking you're SPECIAL, just because you happened to get sick in Incline Village".

It seems that I cannot avoid accusations of megalomania and narcissism, if I should dare to say anything about CFS.

So I'll just speak for the "Tahoe Mystery Malady" group that I was part of, back in 1985.

We said it was NOT like fatigue.You can read our descriptions in Osler's Web.

It was like having bricks piled on you, like all the blood was drained out of your body.

It was FAR more like having a stroke, than anything one could conceivably call "fatigue".

No matter how hard we tried to tell doctors "NOT like fatigue", somehow, the first word didn't make it past their filters, and our description came back sounding more like, "REALLY bad fatigue".

Not really. It wasn't like fatigue at all, but it only made doctors mad to insist upon it. So we gave up, and hoped that eventually, when doctors heard this repeated enough times, it would begin to sink in.

After all, doctors are fond of quoting Sir William Osler about "Listen to the patient..."

Perhaps some day in the future, there's no telling how long it'll take... they might actually do it.

Thanks, Cinder. We appreciate your advocacy, and you hit the nail on the head that some legit patients choose not to participate in research because they don't have it in them to add one more thing to their plate and have nothing left to drop to fit it in.Link posted to http://www.facebook.com/cfsfacts?ref=nf

Perfectly to the point! It's really good to see someone not sick with ME really, really getting it! :)

@Erik it's terrible you were treated that way for trying to do some good. It's ridiculous, people's attitudes, and all the infighting and issues surrounding ME. We should all be able to speak out about this awful thing that has destroyed our lives. Stuff those people. You say whatever you want to say!!!

I was vaguely aware of ME before last year and had seen programmes about the abuse of children with ME (one in 1993 and one in 1999) which outraged me, but what made an ME activist of me was finding out about what had happened to Lynn Gilderdale, one of the two young people featured in the 1993 documentary, early last year. It was heartbreaking to find out that that girl -- who I had assumed had got better, although the programme didn't really convey how ill she was and had been -- had lain in the dark in terrible pain all those years and had suffered so much for so long. And yes, the fact that the scientific community produces useless research like this and that no serious efforts have been made to relieve these people's suffering does give me more motivation, as does the fact that I've become friends with one or two of Lynn's friends since then.

Thanks for all the comments, guys. And thanks to everyone who posted links.

@kathryn: I'm not sure which Kathryn you are on FB. Feel free to PM me, either on FB or in regular e-mail.

@zac: When the British psychologists get their fingers in XMRV research, they use methods that WPI has already stated won't work. If they must occupy their time, they'll do less harm if they conduct these worthless, expensive psych studies.